It’s incredibly important to share the stories of others with Epilepsy, especially those that are insightful, relatable, and positive. I’d like you to meet Freya Symes; I’ve posted her story below and information for further reading. I truly enjoy her point of view on living life with Epilepsy… See for yourself! :)
“Mummy I can’t see”.
I was outside playing in the garden and the world suddenly became black, I couldn’t see anything. Despite the darkness I was surprisingly calm. I don’t remember if the colors were present at that time or if they came later.
These seizures weren’t particularly frightening. Lots of vibrant colors would appear, flashing in bright orange, yellow, pink and red whilst interspersed with white dots. I even saw a bent old lady (in color) sat down in a phase of these seizures. As a child I thought it was so pretty, it was just like looking through a kaleidoscope. However, the tiredness and headaches were draining.
Diagnosed with Juvenile Myoclonic Epilepsy at the age of 3, the years that ensued contained myoclonic jerks, grand mal and absence seizures. The grand mals as all epileptics will know are frightening and debilitating. After having one I would be non-functional for the rest of the day. I slept to rid myself of the horrendously piercing headache which felt as if somebody was prodding my brain with a blunt needle.
Over the years I had been on a plethora of drugs; phenytoin, tegretol, lamotrigine, sodium valproate, keppra and euthosuximide. Like any chemical you put into your body there is the potential for negative repercussions. I found with some of the anti-convulsants I did experience side effects and some were worse than others. I recently retried lamotrigine and due to dosage issues I suffered severe tremors and found my vision deteriorated to the point of being housebound as I had limited abilities to complete daily tasks for safety reasons.
As an epileptic, as much as we all wish to be devoid of the condition there is an acceptance which is necessary to have in order to live. Exercising gratitude for all the things in my life that I can do no matter how insignificant has been very cathartic. Life with epilepsy is unpredictable due to both drugs and the power of the seizures. I was fortunate that my mum was dedicated to doing all she could and more to give me the best life possible. She ensured I had a ‘normal’ childhood doing the things that other kids did unless of course my safety was compromised. She instilled within me that although I live with this condition I shouldn’t use it as a crutch not to aspire to my goals and dreams. I was as capable but perhaps would need to work a little harder to get there.
My mum always believed that there was more to controlling epilepsy than just orthodox medication. She did an enormous amount of research into complimentary medicines. I tried a number of therapies including: massage, nutrition, homeopathy, acupuncture, meditation, aromatherapy and vitamin and mineral deficiencies. Between the ages of eight to eleven it was successfully managed by massage, nutrition, homeopathy and acupuncture. When puberty started it spiraled out of control.
On came the rush of hormones which played havoc with my entire body. It sent my brain into overload creating sparks that flew like unpredictable fireworks. With the imminent transfer to high school, my quality of life at that point was not what it should have been and I needed to maintain the seizures more effectively. Sodium Valproate was my savior. The grand mal departed; however, the absence seizures began which I understand is a frequent occurrence for someone of that age with the hormonal changes. Over the last twenty three years they’ve been present daily and on some days I’d have up to around eighty.
But life goes on. I loved high school particularly after being accepted to a performing arts school at fourteen where I trained as a dancer. After graduating, I changed my major to stage management where I worked in television and theatre.
Life has seen me working full time. I’ve travelled, worked abroad, had relationships, studied, lived alone and more. Having grown up in England I moved to Canada for a brief period and am now in the USA. Having entered the unknown putting my life in the hands of a different health system and a different consultant both in practice and culturally, the risk I took has proved that it is okay. The fear I had although justified shows I can deal with anything that comes my way. It is the unknown which creates our fears.
I am immensely proud of all these accomplishments as they’ve been achieved alongside the epilepsy.
But as we know life isn’t continually rosy. I too have had my fair share of disappointments and difficulties related to epilepsy. I dated someone who couldn’t deal with a grand mal seizure; I’ve been rejected from certain jobs and communicating and memory has forever been challenging on a daily basis. However, looking back I still see success. There has always been an unconscious need to prove myself, to prove that I am just as able as everybody else. That is a thread that has run through my life and will no doubt be with me till I die.
The severity of each individual’s condition differs. Not everyone is in a position to be able to undertake the things I have. No matter what your life is there is always something to be grateful for. I have found epilepsy has put things into perspective. It means that my lifestyle, my attitude and appreciation makes me an overall healthier person.
Currently, I have turned my hand to advocacy in various forms. Having been exposed to the fear and stigma that surrounds epilepsy I realized I needed to make a change. Presentations, writing, exhibitions and working on fundraising projects in particular with the Cameroon Epilepsy Foundation, are all part of that. Education brings knowledge and change. Both are essential in the process of fear elimination but also to ‘Finding Freedom with Epilepsy’.